self-management training for parents with chronic muscular dystrophia

Conditions: Muscular Dystrophies

Summary: the relentless progressive process of muscular dystrophy requires extraordinary medical, physical, and emotional care with severe consequences for caring parents (increased stress and diminished social, psychological and physical well-being). despite the obvious need of support for parents only few and weak data exist regarding efficiency and efficacy of specific interventions supporting parental resilience and coping strategies. the presenting study aims to fill this gap by evaluating the efficacy of a structured self-management training for parents of children with severe progressive muscular dystrophy compared to parents receiving treatment as usual (tau). in addition, investigators measure established biomarkers of psychosocial stress, such as pro-inflammatory cytokines, which will be used to monitor physiological changes with assumed significance for parental health.

background: the relentless progressive process of muscular dystrophy requires extraordinary medical, physical, and emotional care. as a consequences caring for a patient with a severe chronic illness has been associated with increased stress and diminished social, psychological and physical well-being in parents. according to thompson et al. 57% of parents with duchenne muscular dystrophy children have self-reported poor psychological adjustment and, even in comparison with parents of children with other burdens like cerebral palsy or renal diseases, muscular dystrophy was associated with a wider spectrum of problems and parental stress. moreover, parents are shown to have significant stress by feelings of guilt and associated difficulty discussing death issues with their children. however, despite the obvious need of support for parents only few and weak data exist regarding efficiency and efficacy of specific interventions supporting parental resilience and coping strategies. in practice, they are mostly limited to meetings of self-help groups and casual exchange between concerned parents, which is rather a problem-centered than proactive solution-focused approach. as a consequence, investigators see a great need for studies regarding more specific interventions supporting parents' self-management skills, coping strategies and competencies. objectives: the present study evaluates the efficacy of a structured self-management training for parents of children with severe progressive muscular dystrophy compared to parents receiving treatment as usual (tau). in addition, investigators measure established biomarkers of psychosocial stress, such as pro-inflammatory cytokines, which will be used to monitor physiological changes with assumed significance for parental health. methods: participants will fill out online-questionnaires before, during and after self-management training. training interventions will take place in zurich as group sessions (10-20 participants per group). investigators aim for a total of 60-80 participants. parent-couples or single participants will be randomized in an intervention group (participants receiving self-management training) and a non-intervention group (participants continue with already established support). after one year parents from the non-intervention group will change into the intervention group with self- management training as well. questionnaires focus on assessing parental strain and self- efficacy and will take 30-45minutes for each of four surveys. validated biological markers such as cumulative cortisol levels in hair and pro-inflammatory cytokines in the blood will be collected before and after self-management trainings.

Eligibility criteria:
inclusion criteria: * parents with at least one living child affected by chronic muscular dystrophy exclusion criteria: * dying of a child during intervention and analysis. * severe/significant psychological disorder (in case of existing psychological support, participation should be agreed/supported by therapist, too) * recent or concomitant self-management training

Keywords: parental stress muscular dystrophies coping parental support